Help, have terrible Oedema

[Cat1218]

In Febryary I had a bad fall which led to a degree of immobility. My Spironolactone was increased to 100 daily. N o duffrrence to swelling in legs and .feet. 40 g of Furosomide was added. I then got an AKI and UTI and spent 5 days in hospital having every test and IV known to man. I had to stop all water tablets but have an appointment thus week. I have been suspended from transplant list for 4 weeks due to bad mobility. My legs ankles and feet are like tree trunks, I can only walk with a frame and even that is excruciatingly painful. Has anyone else been this bad and then swelling gone. Has anyone been treated sucessfully with something other than furosomide plus Spironolactone. I do not think that they will be giving me Furosomide again. I can not cope with this tightness and pain much longer, please can anyone help. Thank you for reading.

[BritishLiverTrust12 Moderator British Liver Trust]

Hi Cat1218,

We are sorry to hear you are struggling.

Until other forum members are able to reply to your questions, you may find it useful to reach out to your doctor or other health care professional. They are the ones who can best advise you as they understand your condition and symptoms.

If the pain is worsening and severe, please consider calling 111 for further NHS advice.

You may also find it useful to talk things over with our nurse-led helpline, this is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays).

All the best,

British Liver Trust

[Ewife]

Im very sorry for you going through this. My husband doesnt suffer as bad as this, but does get oedema. His kidneys didnt like the increased does up from 100mg, so he sticks his feet up at every possible chance (i think he uses it as an excuse to rest too 😉)Biggest difference hes noticed is raising his ankles through the night. I don't know how much affect this would have when it gets as bad as yours, but worth keeping in mind if you can. Just has a pillow under them so keeps them above his heart.

Atb

Ewife

[Cat1218 in reply to Ewife]

Thank you for replying, I will definately try that in the night.

[Morkmindy]

I stopped spiro just fusemide now pain gone almost spiro does cause pain usually in men but it's worked for me coming off

[Readlots]

Hi Cat, is there an odeama service in your area? Your community nurse might know. We self referred and an odeama nurse came out and discussed options then. measured mum for leg splints. They seemed to help.

Once Mum had ascites and started having those drained it seemed to help her legs too.

A low salt and low fluid diet seemed to help, but it was hard going and not much fun.

I’d definitely talk to the BLT helpline

[Cat1218 in reply to Readlots]

Thank you for your reply, Odema nurse sounds great, I will ask about it. I have been monitoring salt for a long time,I am Celiac so very used to reading labels all the time. I also found the fluid restriction hard. Thanks again.

[Crisp2023]

Hi Cat, it’s also a lot to do with salt. I carefully monitored this and the oedema went away then kept up with Spironolactone. Hope you feel better very soon.

[Cat1218 in reply to Crisp2023]

Cut down on salt ages ago so I know that is not the problem. Went back on 100mg Spironolactone on 1st May so will be monitored from now on. Thanks for replying, I appreciate it.

[Muffinmad]

Hiya,my partner was on both spirolactone and frusemide for a while but they were stopped by the hospital as they affected his sodium and potassium levels.He then got really bad swelling on his legs and tummy,he was having regular ascetic drains too as he was very poorly.He got some water retention tablets from Holland and barret...dandelion tablets to be honest,they helped with his water retention and his swelling.

No side effects to his kidneys either.

I don't know if this helps but it worked for him for a while.Sorry to hear you're struggling...hope it helps a little x

[Fides]

Spirono and Furosemide do have a negative effect on kidneys and stopped working for me, it's only ever furosemide now and only for brief duration as my kidneys can't handle it.

I got AKI and then kidney failure, they had to take me off these and some of my other medications, like my diabetes oral meds and temporarily put me on insulin, even post transplant sometimes my feet swell up and I can't put my shoes on it's so bad.

It's a juggling act, carefully monitoring my creatinine levels to determine how my kidneys are doing.

Happy to say it eventually cleared up with low salt diet and drinking lots of water to flush kidneys out, I would double check that with your team, as I see someone else has said the opposite to this in an earlier remark.